CIDP and Me - Sometimes There Are Bumps Along The Road

Overall it has been a pretty good start to the fall. I turned 40 (eek!) a couple weeks ago and had a good time celebrating with friends and co-workers. Forty is pretty surreal to me as I barely feel like an adult most days. But, I'll take it. In terms of my health and recovery, I continue to stand up every day (either at home or at physio) and my legs are still gaining strength, mobility and muscle mass. All of these things are fantastic and I do not want you to think that I do not appreciate how far I have come. I really have and it's great and encouraging.

However, it is not all good - as the title of this post implies, there are bumps. I'll start at the bottom - my feet. Oh how I loathe my feet. They are a numb/tingly/achy/burny/freezing constant reminder that all is not right in this temple of my body. As my nerves reconnect, my feet regain feeling and this is not always a good thing.  It took me about a year to understand what is meant by 'neuropathic pain' and to admit that I experience it. It is very different from 'regular pain' and no one really describes it well, at least not that I can find. I have been trying to write down what I am going through in detail and may post that eventually. It comes across as a little too scary I think, so I'm holding off for now. That said, I am not wallowing in silence - I asked my doctor about meds to help today and am going to try Lyrica for a few weeks and see how it goes. I hate to add more to my daily  chemical cocktail, but I think it is necessary.

Moving up, we come to my stomach. This week I realised that my stomach can no longer handle Ibuprofen. Sigh. I like Ibuprofen and find it much more effective than Acetaminophen for most things. However, if I take more than a couple a week I suffer with stomach pain and nausea. The absolute last thing I want is to end up with another stomach ulcer, so I have decided to give up on Ibuprofen and look for other ways to soothe my achy muscles (heating pads, stretching and wine).

Continuing along, we come to my hands. My hands are favoured about as much as my feet these days. As you know (if you've been following my blog) my hands started becoming weak several months ago. To curb this I was placed on a weaning dose of Prednisone, which seemed to be helping. I have been seeing slow but steady improvement in strength and was feeling pretty good about it.. Heck, I can even open a can of pop or beer all by myself now. So imagine my distress a week ago when, in the middle of choir practice, I noticed that my right index finger was becoming fuzzy (the technical term) and more and more paralysed. I tried to convince myself that it was tired and a result of over-use as I had spent a fair bit of time on my computer that week. I rested it over the weekend and promised to call my neurologist if it did not improve. Well, it did improve a little but did not go away and by Tuesday my left index finger and thumbs had joined in the fun. Sigh. I made the call and am glad I did. He thinks it is likely a carpel tunnel thing as there is a lot of pressure on the few connected nerves in my wrists, but does not want to risk anything, so suggested a two-fold solution. First, I am to up my Prednisone dose and wean bi-weekly instead of weekly. I kind of expected this and it is a lesser of two evils, much as I hate the idea of longer term steroids. Second, he wrote me a prescription for carpel tunnel splints that I am to wear whenever I am not doing anything. Scott has decided my new nickname is 'Splinty' as I already sleep with splints on  my feet. Maybe one day I can add a mouth guard and neck brace into the mix to complete the nighttime bondage...

In more positive news, physio continues to be great and I am still making improvements. I am sitting down with much more control, which pleases everyone. For the longest time I sat down like those old toys with elastic joints and a button on the bottom - you pressed the button and they collapsed. Now I can slowly lower myself in a controlled motion. I do still rely on my arms, of course. As I mentioned at the outset, I am standing both at home and physio. At home we set the walker up against the counter (right in front of the kitchen sink, which I believe is a not so subtle reminder of the household duties I no longer partake in) and I stand and sit 5-8 times in a row. It feels so good to be on my feet and it gets easier each day. I am also now able to use the walker to transfer from my chair to the bed or recliner. This is more involved than what I have been doing so I don't do it every time, but it is a step in the right direction. The next progression will be to use the walker to walk a bit at home. In physio, we are working on building endurance with the walker and balance in the parallel bars.

So there you have it - you take the good, you take the bad...

CIDP and Me - Up and At Them

This was a pretty big week for me, as those of you on my Facebook already know. I achieved a long elusive milestone in physio - standing up unassisted. I'm going to clarify what this means a little, as there has been some confusion. It's true, I have been standing and walking with a walker for months - it's how I'm getting up that has changed. Until this week I needed assistance from the physiotherapist (pulling me up using a belt and/or blocking my knees) along with the stability of a bar or walker to get up. Now I only need the stability offered by the bar or walker - the rest is done with  my legs and arms. It is a huge step (no pun intended) and really marks a new chapter in  my recovery.

Here is how it all played out... My therapist got back from vacation this week and was really impressed with how I walked in the parallel bars on Tuesday. I was straighter, my motions were more fluid, and my feet were facing forward the whole time. I knew that we were probably going to move things to the next level, whatever that would be. When I got there on Wednesday she said she wanted to see how far I could get up on my own. I was parked between the bars and had one hand on my chair arm and the other on a bar with my feet firmly planted on the ground. I gave a push with my arms and legs and, low and behold, I popped up to standing! I believe my reaction was "holy shit, I just did that didn't I?". She smiled and said that I did indeed. We both agreed that wine was in order.

Having achieved this feat of strength once, she decided it was time to take this party trick on the road. She suggested that Scott should come in to be cleared on spotting me so that I could stand at home using my walker. This was to be a delicate suggestion - recall that the last time I stood in a walker at home I broke my ankle and landed in hospital for months. There is an understandable nervousness about the whole situation. However, it is what it is and the more time I can spend on my feet, the better.

When I got home and told Scott what happened, he was more excited than I was. We called some family and sent some emails. I explained about the home spotting and he agreed to come and watch the following day but made no promises about being ready to do it at home. We decided to hold off on the official celebration until the weekend as it was an IVIG week and I don't like to drink while that is going on. We did invite a couple friends over to join us on Friday night.

Scott met me at physio on Thursday and watched as I repeated my feat (in the walker this time) and then walked the full loop without a break. Not only did I stand up again, I was able to go further than I had before and was putting much less weight through my arms and shoulders. Everyone was thrilled and Scott gave my physio a big hug. On the way out he did a little jump and clicked his heels, making everyone one cackle. He didn't get any training on Thursday but agreed to come back again Friday for it, which he did. On Friday we set up a walker against the physio bed so that it would not move and I practised standing and sitting with Scott standing by. I did this 3 or 4 times with no issue. We then moved over to the bars and I added yet another new trick to my repertoire - I walked the length of the bars with only one hand on a bar! I'm pretty excited about this too.

I will be trying out standing at home this weekend and am confident it will go well. I know the road is still long and slow, but it is good to reach this milestone. My next goal is to stand up using only the arms on the wheelchair for support... I'm not giving a timeline on this though.

We celebrated last night with a couple of friends and a bottle of Barolo wine that Scott got in Italy. SOOOO tasty. We have one bottle left and will save that for another milestone (maybe when I'm back to walking with a cane).

In other news, I went back to choir this week. It is the first 'normal' activity that I am adding back into my routine and it went really well. I was worried that my voice wouldn't be there and that the rehearsal would wipe me out too much. I was a little rusty at first but my voice is fine and my range is still there (or there enough). I was certainly tired by the end but it did not kill me. It was really nice to see everyone and to distract myself from myself for awhile. I'm glad I decided to go back.

So that was my week.

Ciao for now!

Accessible? I Think Not

I've been on a bit of a vacation as my physiotherapist is on vacation and I had a whole week with no medical appointments. It has been nice and relaxing and a welcome change of routine. That said, I really don't have any updates to offer about my progress or any wacky medical stories to share. However, I do have a bit of a rant in me about the lack of really 'accessible' places around here. I am lucky to have Scott and friends who are willing to drive me around and help me get over door jams and the like, so I can manage pretty well. I would hate to be alone and in a wheelchair in this area - I would be pretty much forced to stay home. Even the hospital barely passes in some respects. But I get ahead of myself... I'll break it down into categories.

Parking

There are A LOT of people around with handi parking passes and not nearly enough designated spaces to handle all of us. I do not want to judge people with the pass and am fully aware that there are 'invisible illnesses' and many conditions for which a pass is warranted. However, I know that a few abuse the privilege and that ticks me off. So sometimes we are forced to park in 'regular' spots, it is what it is.

My main parking beef is specific to the Sobeys parking lot in North Sydney. The designated spots there are huge, which should be a good thing. The problem is that they are actually too big, so people routinely double park in them (with passes). When this happens there is no way to fit my wheelchair in beside the car, which is pretty much the point of having bigger spaces to begin with. It makes me crazy with a sort of parking lot rage and I am oh so tempted to rub my chair all along the side of the offending vehicle. I don't though, that would be wrong... Instead, I patiently wait for Scott to back up into the lane so that I can get back in the car.

The way I see it there are three issues here. First, people do not pay attention to the rules. Second, the spaces are too big and not really marked clearly - it would be better to have smaller spots and a spacer of diagonal painted lines between spots to leave room for wheelchairs (the hospital does this with success). Third, there need to be more designated spaces as there seem to be so many people needing them. One of these days I'm going to write Sobeys about this. The Walmart at the other side of the mall does a much better job of marking spaces - I just hate Walmart with all of my being so can't start grocery shopping there...

Restaurants and Store Entries

Lots of places have ramps or are level with the sidewalk, which is great. I believe it is a rule that any new business must be nominally accessible and most are. But really, they aren't. They have ramps, yes, but then there is a lip of 2-4 inches to get over the door jam. If I am with someone it is generally easy enough for them to pop a wheelie and get me over the lip. However, I don't think I could do it alone and really wonder about people in power chairs or elderly people who may not have someone fit enough to push the chair up and over.

We were at the Travelodge hotel this week (Scott was playing a show there) and it had a big sign by the door saying they were 'accessible'. First of all, there was no avoiding going over a speed bump when wheeling over from the parking lot (I did manage this on my own but it required a good push and upper body burn). Next the concrete ramp to the door was pretty steep and did not level off before the door so pushing the button and not rolling backward at the same time was tricky. Finally, there was a big ole lip of 3-4 inches to get in the door and I could not manage this on my own. Oh yes, the button also needed a second push as by the time I maneuvered from the button to the door it was already starting to close. Once inside everything was fine.

Inside the Store

I'm not a big shopper and never have been. CIDP has been a wonderful excuse to expand my reliance on online shopping for most things. But, sometimes I need to go shopping - usually for groceries. Grocery stores are pretty accessible - they are designed for push carts after all. So that is great. I can wheel myself around with no issue. I do have to be careful as people are not always the most aware of me and there always seems to be a near miss collision at some stage of the trip.

My biggest complaint is that I can't reach many items. I will try to be helpful and, say go get the cereal, only to find that it is out of reach. I'm not sure how to fix this or if it is even realistic to ask for it to be fixed, but it's frustrating. People are usually nice enough to grab things for me but it sucks. The other frustration can occur at the checkout. Thankfully it has only been an issue at one store - the Sobeys on Prince Street (that's right, the fancy new one). The problem here is that the debit/credit machine is fixed in place and is too high for me to actually use. I had to give a friend of mine my pin and ask her to put the payment through for me! Crazy, right? I certainly would not want to be stuck there alone and have to give the cashier my pin!

Bathrooms

I try really hard to avoid public washrooms and, for the most part, am successful. However, on occasion they are necessary, especially at the hospital. One would think that of all places, the hospital would be fully accessible. But nay nay. I have had to use a few washrooms there and they are not all created equal. Sure, they are all big and have a bar to help with the transfer. Some have a lower sink, mirror and towel dispenser, some do not. In some cases the bar is too far away from the toilet to be of any use to those of us under six feet tall. It is frustrating because it should be standard. In a building designed for sick and infirm people I have found two acceptable washrooms (and I have to stretch to reach the towels in one of them).

Sidewalks

This is specific to downtown Sydney. The sidewalks are a deathtrap. They are cracked and uneven and a total mess. Wheeling from one store to another is a bit of an extreme sport. It would probably be easier to go on the road (if it weren't for the pesky traffic). There are days where I think I could kill time after an appointment by wheeling myself a few blocks to get a coffee, but I fear it would not work. Not to mention the tricky part of getting over the door jam and into a store. So I am forced to rely on people to help me get around.

So there you have it - a little rant about the trials and tribulations of getting around town in a wheelchair. There are some places that are great and really easy to get around - I just wish there were more of them. I also wish that people would think a little more about what accessible actually means. It is not about meeting a minimum code requirement, it is about providing functional access for people with limited mobility. The whole point is to enable everyone to lead independent lives. If builders and designers took a few minutes to actually think about how an entrance, parking space, bathroom, or whatever, would be used by someone in a wheelchair (or even better, in a power chair), I think that our spaces would be in much better shape.

That's it for now. I hope everyone is enjoying the long weekend:)